Getting an ICD is a big decision for anyone--let alone for a parent to have to make for her/his child. There is no one right answer for everyone and no one right way to make this decision.

We hope and expect that your physician can be of great help to you in this process. We also know, however, that you need to know all you can about your child's condition and treatment. You need to be an active participant in any treatment decision. And your child should have a part in this, also--one that is appropriate for his/her age and emotional state.

In most cases, an ICD is a life-long commitment--we see very few people who can get their devices permanently removed after they have been implanted. This also means that your child will, with today's ICD, have to look forward to many smaller surgeries to replace the batteries at the very least. They will also still have their activities (sports) restricted--see the page on the Bethesda Conference Report.

Finally, the decision to implant an ICD in a child should not be made in a hurry. If you need to take some time to think about it and get all the facts, that is OK. If you want to get a 2nd opinion from another physician that, too, is fine.

As more young people are implanted with ICDs, we learn more about the life-saving capacities these devices provide. We are also learning more about the genetics of SADS conditions and who may be more at risk of an event that an ICD would prevent. Our knowledge today would say that all LQTS Type 3 patients should have an ICD. LQTS Type 1 is usually managed well on beta blocker medication alone. LQTS Type 2 (and Type 1 with events even on beta blockers) should be evaluated for an ICD.

The SADS Foundation is dedicated to providing information, assistance & hope to you and your family. We hope the materials below will help in this difficult time.

Articles (these materials are for personal use only)

LQTS in Children in the Era of ICDs
Susan P. Etheridge, MD, FACC, Shubbayan Sanatani, MD, Mitchel I. Cohen, MD, FACC, Celia A. Albara, MD, Elizabeth Saarl, MD, FACC, David Bradley, MD, FACC

About ICDs--Mayo Clinic link

Role of Transvenous Implantable Cardioverter-Defibrillators in Preventing
Sudden Cardiac Death in Children, Adolescents, and Young Adults
Ritu Chatrath, MD; Co-Burn J. Porter, MD; and Michael J. Ackerman, MD, PHD

Young at Heart: Understanding the Unique Psychosocial Adjustment of Young Implantable Cardioverter Defibrillator Recipients
Samuel F. Sears Jr., Jason L. Burns, Eileen Handberg, Wayne M. Sotile, and Jamie B. Conti